Topherooni’s Weblog

Today marks Topher’s 2 years from being discharged from the NICU and finally going home.  He “celebrated” with his final appointment with his Physical Therapist as well as his Early Interventionalist at home.  Topher will start Preschool in the Fall with Franklin County at the Early Childhood Learning Community (near our church) off of Garrett Street.  There he will continue to receive PT, OT and Speech Therapy on a weekly basis in a classroom setting.  We’re looking forward to school.  Supposedly, kids with speech delays really bloom in the school setting where they are surrounded by their peers.

We saw Dr. Mc G this morning for Topher.  She wanted to follow-up on his eyes to see the effectiveness of his contacts.  If you recall, Topher has a 6.5 point difference between his right and his left eye.  Dr. Mc G said that at his last appointment in February, she was already seeing signs that showed he was favoring his left eye which is his stronger eye.  Today she checked to see how well his eyes reacted to interruption (covering one eye) while he was focused on a toy.  She was happy to see that both eyes  seemed to be coordinated (instead of having one wander off) and that there was no preference of usage.  So both eyes are developing okay and the contacts are working.  We’ll follow-up with her in another six months.

Topher got his first pair of contacts on March 29th.  It’s been almost two weeks since he’s had them, and we’ve lost (and found!) them 3 times already.

The most common question we get is: How do you put contacts on a 2-year old?  Well, it’s really a two-person job.  One person holds him down (sitting on him is preferable because it prevents getting kicked in the head) while the other person puts them in or takes them out. 

Topher got Rigid Gas Permeable lenses (aka “hard” lenses).  At first, we thought he’d be getting soft ones, but after seeing how challenging it is to get Topher to cooperate (prying eyelids open on a screaming and wiggling toddler is NOT fun!), I can understand why we have hard lenses. 

With hard lenses, putting them in is as “simple” as prying his upper eyelid open and then “sliding” them in.  As for removing them, they just pop out when you get his eyelids open enough.  Soft lenses would require us to “pinch” them out instead.

It used to take Shane and I about 20 minutes to remove them.  Now it takes about 1 minute.  We’ve learned that the faster everything happens, the happier Topher seems.

Now for the little “miracles” of these past 2 weeks: remember how I said we lost them?  Topher’s right lens seems to be the “problem” lens.  The first few days, it would always slip off to the edge of Topher’s eye.  And that’s also the one that keeps getting lost.  On his second day of having them, he must have rubbed it out, because when we tried to remove his right lens, it wasn’t there.  Luckily we found it in his crib. 

Three days later, on Friday, the right lens went missing again.  This time, Shane found it in the dishwasher while he was rearranging the dishes to be washed.  Thankfully we found it BEFORE he started the load! 

The third time he lost his right lens, I found it in the pantry on top of the dog food storage container.  Now we check his eyes every 60-90 minutes.  We also check them before we leave the house, and before we head home from errands.  It’s a little paranoid of us, but at $125 per lens per eye, it’s worth it.

‘Nuff said!

Topher turns 2 today.  His actual “corrected” age is 20 months, though.  We plan on celebrating in Traditional Tsai fashion: going out to eat!  And also bringing a few friends along to join in the food fest.

In honor of Saint Patrick’s Day, I’ve been posting limmericks on Facebook.

(Gotta warn you, they’re not that great, but progressively get better…)

#1:

There once was a boy named Topher

Who was almost given the name Limmerick

They changed his mom’s mind

With words said in kind.

And now his name rhymes with Gopher.

#2:

There once was a baby named Topher

Who was saved by the power of prayer.

He’s grown so well.

He eats quite swell.

And he’s doing great so far.

#3:

There once was a preemie named Topher

Who was born at twenty-three weeks.

He was pretty darn small (1 lb 4.5 ozs)

Still ain’t very tall (5th percentile)

But hey, he’s got chubby cheeks!

Shane and I have always joked about how cute Topher is, and how much cuter he would be without his glasses.  Well, God has answered our prayers, kinda sorta….  Topher is getting CONTACTS!

Topher had his annual appointment with his Opthalmologist (can you believe he’s been wearing glasses for a whole year now???).  His right eye is now VERY nearsighted (he prescription went from -8.00 to -16.50) and his left eye is a bit worse, too (going from -6.5 to -10.00).  Because of the 6 point difference between each eye, glasses would not correct his vision.  Actually, the way Dr. McG put it, if he wore glasses, his vision wouldn’t make a proper image, so his brain would just “shut off” his right eye and ignore the vision it sees.  This can cause “lazy eye” amongst other eye problems.  The official term is “ambliopia” (sp?).  So with contacts his right eye would still continue to work with his left. 

Thankfully his retina is still stable from his laser surgery.  Also, the curve at which his vision progressively gets worse is supposed to be steep the first few years for preemies.  According to his opthalmologist, he’s at the top of the curve.  So hopefully by next year, the worsening of his eye sight will have tapered off.

We have another appointment next month to get him fitted for his lenses.  They make special ones where you can keep them in 3-4 days at a time. Doctor Mc G tried to reassure me that little kids get used to the lenses quickly by telling me of a 4-year old who puts her own lenses in all the time.  Hmmm…  I’m not sure how cooperative Topher will be when the time comes.

In other news, Topher can now moo, except it sounds more like “voo.”  🙂

This WAS Topher’s central line (aka a broviac).  It was surgically removed yesterday (February 18th).  Now he just has a single stitch in its place and a small dressing to keep the area clean.

We still have to wait about a week before he’s allowed a tub bath.  He’s been getting sponge baths for the last three months.  And he gets his fill of splashing with the water fountain at church(it’s low for the little kids of ChildCare).

This is Topher happy:

Btw, for everyone who says that Topher looks like Shane, *I’M* the one who scrunches up my nose like that when I smile, not Shane…  🙂

Topher saw his surgeon today at Children’s Hospital.  He decided to take out the Gastric Tube.  It was a rather simple procedure: cover the area with gauze to prevent spray and yank.  Oh, and keep the toddler somewhat restrained while this is happening.  It didn’t seem to hurt since Topher didn’t cry much afterwards.  It also helped that Shane was there to restrain Topher.  The last time I was there by myself and I got light-headed when the surgeon cauderized the G-tube site.

Topher’s scheduled to get his broviac (permanent IV Cath) removed about 5 weeks from now.  He’s been eating like a champ and has gained about 4 pounds since he was hospitalized in Orlando 2 months ago.

In other news, Topher has a vocabulary now!  It used to be just grunts and pointing.  Now he says: mama, dada, baba (for bottle), mmmm for more (as well as signing more at the same time), and just tonight, ga ga (I was trying to teach him “go”).  We’re excited that he’s finally catching up, speech-wise.

Thanks again for all of your help, thoughts and prayers.

Our usual tradition of Christmas cards includes a letter that shares our adventures from the year.  But this year, we (more Clara) felt that our 2009 wasn’t worth sharing.  Or, at least, it wasn’t worth reliving since we had some personal nightmares.  So, as I wait for a representative from USPS.com (I’m approaching 17 minutes, should I hang up??) to dispute a charge, I thought I’d “share” my 2009…. via blog…

2009 started off in the usual way: our dog, Bailey got her yearly check-up.  Did you know that she was a Christmas present when Shane and I were in Indianapolis?  Then, in February, it was a balmy 60 degrees (no snow!) and I had decided to take the boys and Bailey out for a walk.  Without going through all the details, Bailey was attacked by a pitbull who ran out of its yard.  Bailey suffered a broken leg, but thankfully survived.  The cops came and shot the other dog.  But we’re most thankful that neither I nor Toby or Topher were harmed in the incident.

March comes around and Topher celebrates his first birthday.  We had a delicious lamb shank dinner from Ayse’s, a little Turkish place in Ann Arbor…

Around April or May, we found out that we will definitely be staying in the Columbus area until June 30, 2012.  Shane was officially accepted into the Adult Electrophysiology Fellowship at (the) OSU.

Then, during the entire month of May, Toby was finally potty-trained in time for our vacation in June.

In June, the whole family traveled to the San Francisco Bay Area to visit with Clara’s family and dear friends from college.  We also met Clara’s twin nephews (Raiden and Thorin) for the first time since they were born.  Toby and his older cousins (Malachi and Gideon) had a blast chasing pigeons on Pier 39, too!  Toby and Topher also got to play in a swimming pool for the first time.

Sometime in July, Shane and I started a new “hobby” of sorts: we started shopping for and designing  our Dream House.  After looking at about 30 model homes, some more than twice, we’ve finally settled on a favorite.  If you’re ever in town, we’d love to show it to you!  Of course, it may take a few jobs before we finally settle down and build it, but we have a solid idea of what we want for the future.

In August, Clara joined a women’s group called “Side by Side.”  It’s an offshoot of CMDA (Christian Medical/Dental Association) full of doctor’s wives.  The women’s husbands span the entire training/career spectrum from medical school through attendings.  It’s been a blessing to go and share with other women the burdens of long work hours, parenting as a “single” parent (it feels like it to some); plus, they provide childcare, so the boys have enjoyed new friends.

In September, Toby started preschool.  He’s really enjoying it!  As Miss Lori says, “Toby always has something to say.”  So we don’t worry about shyness with him.  He’s even learned how to write his name!

In October, Toby and Topher went trick-or-treating for the first time.  Toby was Robin, Batman’s sidekick.  🙂  Topher also had a hearing test: his ears are just fine.  He’s just ignoring us!

And in mid-November, Shane had the honor of presenting an oral abstract at the American Heart Association’s national conference in Orlando, Florida.  To celebrate, we decided to take the entire family to Disney World!  Even the boys’ godparents came a month early to see us there.  Unfortunately, this trip turned into another nightmare.  Topher started throwing up within 10 minutes of checking in to the hotel and didn’t stop until about 3 days later when he had a seizure (from dehydration) and was admitted into the Arnold Palmer Hospital for Children in downtown Orlando.  Topher had 2 bowel surgeries (he had complications from his previous bowel surgery when he was in the NICU which caused a bowel obstuction that didn’t allow anything to go through) and didn’t get back to Columbus until the Monday after Thanksgiving.  Topher was finally discharged from Nationwide Children’s Hospital one day before Toby’s 4th birthday (Dec 10th).  He still has a broviac (permanent IV) and a gastric tube on him until further notice.  Thankfully though, he’s not attached to any IV pumps.

Which brings us to December: Toby turned 4!  We can’t believe our little boy is already 4.  He’s quite accomplished.  He loves card and board games; plays PS2 games that were meant for 10 year olds, and now enjoys  Wii bowling.  He also likes to tell jokes that make no sense.  I’m told this is typical of kids his age.   He does have some simple chores (he;s not always playing!): putting away the utensils, sorting and matching socks, and (when I remember to) swiffering the kitchen floor.

So there’s our 2009!  Not our favorite, but there you go.  Hopefully we’ll have a less eventful 2010.  God bless you and yours for the upcoming New Year!

With Love and Thanksgiving,

Shane, Clara, Toby, Topher & Bailey

Topher had an x-ray study done this morning.  Unfortunately, the Radiologist couldn’t use his G-tube to deliver the barium, so Topher had to get a tube down his nose.

Results: the obstruction wasn’t there anymore.  There’s a slight narrowing of his bowels where he had his first surgery where they cut out the dead gut, but that’s about it.  He’s been given the approval to “pig out” (as Shane puts it) on table food.  So far, he’s only enjoyed 3 Chicken Mc Nuggets.  We’ll be having rice and brocoli tonight!

So far, it looks like he may not need another surgery if all goes well with table food.  Thanks again for all your help and prayers!

Merry Christmas!